He has seen five of his siblings- two of his brothers and three of his sisters, die from the same condition called
Progeria which is known to affect just 80 people worldwide.
Sufferers are not expected to live much beyond the age of 14.
Life was made unbearable for him and his late siblings because of their disease, they were mocked in school and called names like ‘big-eyed boy’ and ‘Patlu’ meaning skinny.
Eventually they all stopped going to school.
But despite the grim prognosis Ali has refused to give up hope. Ali says:
‘I very much want to live and I hope there is medicine for my condition out there. I’m not scared of death but my parents have suffered a lot. I’d love to live much longer for them. I don’t want to burden them with any more pain..
We had each other (his siblings) but that was it. We had no life. When we did go to school we were pushed and shoved, called names, kids tried to harm us. We can’t do much physically either; our lungs are so small we get breathless easily.
I would love to be a normal person who can play, go to school, do some sports, take some risks. Sometimes I get depressed but most of the time I make the most of the life I have.’See photos of Hussain and family below (viewers' discretion advised)
Ali & his family |
His parents Nabi Hussain Khan, 50, and Razia, 46, are first cousins and were the product of an arranged marriage 32 years ago.
This story kinda reminds me of a certain Indian movie I watched months ago - PAA - the Paa movie revolves around a young boy with a real medical condition that results in accelerated ageing called progeria.
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